Let’s Get Real — 5 Minutes for Special Needs

Let’s Get Real

by Debbie



                               

I’m a realist.  Because of that, I sometimes get frustrated when it comes to raising a child with Down syndrome.  I want to know what is realistic and my questions are usually met with, “Don’t put limits on your child.  She can do anything she wants.”

Well, yes, and no.  I mean, yes, if we limit our children and say, “Oh, no, she can’t do that.” then she is going to live up, or down, to that expectation.  That’s true for any child or for anyone for that matter.  But let’s be realistic here.  There ARE limits.

Let’s take me for example.  I love to dance. More than anything in the world I wanted to be on my school’s drill team squad.  The problem is, I’m not very talented.  It took a lot of hard work on my part and only twice did I succeed and that was only as an alternate; once as a freshman and once as a senior.  I think I only made it as a senior because I tried out every year and the instructor saw how much it meant to me.  Thankfully I still got to dance with the team both times.  Of course, when I went to college, I knew no amount of practice in the world would get me on that squad.  I didn’t even try.  I’m a realist.  I knew there are limits and I had reached mine.

I understand that hard work can get you what you want and you can accomplish things otherwise thought out of your reach.  Giving up too soon may be a big mistake.   This is something I’m struggling with with my oldest daughter right now.  You can read more about that here on my personal blog.  These struggles with the teen have made me think about the struggles we have with Peanut and her challenges.

If you’ve read my posts at all, you’ll know Peanut’s biggest challenge is speech.  Everyone seems to have the solution to her troubles.  Sometimes they think it’s a simple fix.  It’s not.

Recently we had a meeting with her speech therapist.  We again discussed where we are and were we can go.  As wonderful and as positive as her therapist is, I often come out of those meetings a little dejected.   I wonder if it’s time to just forget about verbal speech and accept that she won’t be able to talk.  I want to know if it’s time to just give her sign language and be happy with it.  It’s a daily struggle and often disheartening.  Sometimes I just want to give up.

I want to know what is realistic.  Unfortunately, that answer is not there.  Not yet at least.

Email Author    |    Website About Debbie

Over the years I've worn many hats, but the hat of mother is one of my most special. I am not a perfect mother. I make many mistakes, but I have my share of triumphs also. When our youngest daughter came along, she came with a little something extra: Down syndrome. That's when the hat of advocator was added to my hat box. It a hat I try to honor every day and one I like to share with others to let them know they are not alone.

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1 Angela Melum March 31, 2011 at 11:34 pm

THANK YOU!!! I too am a realist. It’s just nice to know I’m not alone.

2 Debbie April 1, 2011 at 7:06 am

Same here, Angela. 🙂

3 Nancy April 1, 2011 at 5:10 am

I’m the parent of two daughters with PDD, so in some ways I know where you are coming from. It’s so hard not to just say, HEY I CAN ONLY DO SO MUCH, GET REAL! SHE CAN ONLY DO SO MUCH! But I have constantly been surprised at what my daughters have been able to accomplish and their incredible bravery against what seem like incredible odds! They are adults now and still constantly surprise me. I’ve become a realist who believes in the small miracles in everyday life that make all that hard, hard work worthwhile. I’ve seen so many of the other kids my daughers went to school with whose parents gave up…way too soon. I’m sad because I know these kids all had incredible potential that was never tapped into because someone gave up. I guess I’m a half full person. Keep up the fight, your peanut may surprise you.

4 Debbie April 1, 2011 at 7:19 am

Nancy,
Make no mistake, I will NEVER give up on my daughter and will always challenge her to do more, but sometimes in our quest to advocate for our children it seems we blow so much smoke and make it sound all peaches and roses. Sometimes we need an answer for what we are dealing with so we know how to work with it and it gets frustrating when your questions seem to be brushed aside with “you never know what they can do.” I expect great things out of my daughter, but I don’t expect her to be a neurological scientist. I believe she is a very smart little girl and when we open up her speech she will amaze us even more.

Thank you for sharing your story. 🙂 Yesterday was just one of those days for me.

5 Jo April 1, 2011 at 6:34 am

I am struggling with something for my youngest son while different from your’s with speech but along the same lines as when does reality take over. I too am realist but find others round me aren’t in that same place. Right now I am struggling with how much do we work to fit into the world versus putting in place some accomadations to help him cope better in that world. One thing I really struggle with is people’s comments oh but you don’t want him to be different. Hmm but he is, it is a neuromuscular condition which while we can improve we can fix it. It brings its own set of unique challenges.
I hope you find the decision that both you and your daughter are comfortable with. It is a tough one for sure.
Good luck with finding the answer.
Peace

6 Debbie April 1, 2011 at 7:22 am

April,
I totally understand. It’s not that we don’t want to challenge and get everything we can for our children it’s just sometimes we need an answer or at least would like to hear one. Good luck with your quest to figure out what is best for your son.

7 Jo April 1, 2011 at 8:03 am

Debbie
All I can say is thanks for such a thought provoking post. It has come on a day I so needed to hear from others facing similar challenges. I have tried all the suggestions others have made for my son over the past few days and right now I have a little boy is completely zapped.
I keep trying to explain it like if you have a broken leg then you need crutches. You may not need them forever but you need them to help bridge the gap.
Peace

8 Farmer*sWife April 1, 2011 at 1:29 pm

I can only try to imagine this. I forget sometimes, that Peanut has such a strong speech impediment or issue.

It makes me appreciate how well my children are able to communicate to me – even if in frustration or tantrum.

Don’t give up. Is it possible to supplement her verbal therapy with sign language? Would this give her the opportunity to better communicate while still working on the verbal?

You have probably already considered this. But, I just wanted to put it out there. I think you do well balancing reality with optimism without limiting or holding her back.

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